When I first started sharing our family’s journey six years ago, I wrote about one diagnosis – autism.
It was overwhelming and I needed support. I needed other moms. I needed a real life example of what to do and how to help.
Since then, I have found all of that and more, mostly right here, with all of you.
But as the years have progressed, more diagnoses have come, for both of my children.
It’s one of the ugliest words I know in the English language – comorbidity.
My Sons’ Comorbid Diagnoses
My oldest son will be 16 next week. The following is his list of diagnoses, as of last year, in the order they were received.
Autism Spectrum Disorder
Generalized Anxiety Disorder
Learning Disorder – Math
Systemic Lupus Erythematosus
My youngest son just turned 13. The following is his list of diagnoses, as of last year, in the order they were received.
Learning Disorder – Reading and Writing
Generalized Anxiety Disorder
Bipolar Disorder, Type 1
Selective IgA Deficiency
(At one point, he also had Panic Disorder, Irritable Bowel Syndrome, and Separation Anxiety Disorder on the list as well. As time went on, they were eliminated or replaced.)
Both of my children have more diagnoses than any one doctor can possibly treat or understand. They both have mental health diagnoses in addition to chronic physical illnesses.
In my experience, treating a child with comorbid conditions is absolutely exhausting, and at times, terrifying.
This Is What Happens When Your Child Has Comorbid Diagnoses
Take a look at the two lists of diagnoses above.
Now imagine going into a new doctor’s office and filling out the initial intake form. Imagine needing to go to the ER and trying to explain them all. Imagine talking to health insurance company agents to pay for necessary treatment, but having to repeat the list over and over again.
Treating a child with comorbid conditions is difficult at best. Mothering that child and trying to figure out how best to help him, feels impossible most days.
Understandably, after reading any initial patient history, there is immediate concern on the part of any doctor not acutely familiar with my family. I have learned that in order to help allay this concern, I need to be prepared. Really prepared.
Having an off day and not being able to accurately articulate symptoms, ongoing issues and medical history can be the difference between my son receiving the care he needs and us being sent home.
Any time we go into an unfamiliar medical situation, doctors office, therapists office, emergency room, and even hospitalization, I bring my child’s entire medical history with me.
This binder includes:
Most recent blood work (I always ask the requesting doctor if I can take a copy as well when we meet to discuss the results.)
GeneSight test results
A record of every diagnosis from the doctor who first diagnosed (very important to ask for this in hard copy)
A record I keep of symptom onset and any behavioral changes, by week and/or month. This way, when asked, I can easily say, “He was first treated for abdominal pain in October of 2015.”
Having my child’s medical history at my fingertips takes the burden off of me. I don’t have to prove anything to a suspecting doctor when I have the records right there. Most doctors are far more likely to respond to another doctor’s notes than anything I might say. (We can argue all day long if this is fair, but it is certainly reality.)
I am so thankful for the specialty doctors that have worked with and truly helped my sons.
I am thankful, and I am also aware that part of working in a specialty means that this doctor knows a lot about one area, and probably not enough about another. While this seems obvious, the truth is, when you have a child with comorbid conditions, it can feel like every single specialty is recommending a variety of different treatments that don’t necessarily take each other into account.
A large part of mothering my boys is being the liaison between these doctors. It’s being the one that has to say, “I know what you are recommending is important, but he is already taking three other medications and has doctors appointments twice a week. We cannot come in for weekly shots at this time. Is this something that can wait three months?”
Just as important is the doctor herself. The best doctors we have found are specialty doctors willing to acknowledge that they are not experts in other areas. They listen when I share what happened in another doctor’s office. They look over another doctor’s blood test results before ordering more of their own. If you are not finding this willingness to be a part of a larger team, may I suggest that it may be time to look for a new specialist, if at all possible.
My blood pressure is rising just thinking about what I want to share about my experience with health insurance companies. This may need to be an entirely separate post…
In my experience, particularly when a child has comorbid physical and mental health disorders, rather than getting more help, it leads to less. Here’s a perfect example from a regular conversation I have with our insurance company (they love me by the way…).
Health Insurance agent: It says here your son has a generalized anxiety disorder diagnosis as well as an autism spectrum disorder diagnosis. We don’t cover mental health here. You will have to resubmit this to our mental health insurance provider.
Me: But this is for occupational therapy. You cover that in-network for autism.
Health Insurance Agent: There’s no way for us to know that the sensory issues he experiences are because of autism or anxiety. We consider that to be mental health related.
So I hang up and call our mental health insurance company. (Incidentally, this mental health insurance is one our medical insurance partners with for coverage. We didn’t choose this separate coverage. This is how our health insurance company meets the legal requirement to cover mental health. They contract it out to a less expensive and much less effective mental health provider.)
Mental Health Insurance Agent: We don’t cover occupational therapy at all. That should be covered with your medical insurance. That’s related to his autism diagnosis.
Me: They say it is related to anxiety and that’s your area.
Mental Health Insurance Agent: Well, you need to submit this to them. We don’t cover occupational therapy.
After doing this crazy dance four times, we finally realized if we wanted my son to have OT, we would need to pay for it out-of-pocket. We did just that and it was incredibly helpful. But thousands of dollars later, I can’t help but feel like the system is intrinsically broken, especially for kiddos with comorbid, chronic conditions.
This one has nothing to do with anyone other than me.
One of the hardest parts of having two children with comorbid diagnoses is trying to figure out what is causing what.
Is he throwing up because of his Eosinophilic Gastritis, or is it the new anxiety medication?
He is struggling to get to his classes today. Is this social avoidance or is he having an autoimmune flare-up?
Why is he having leg pain again? Is it his arthritis, a food allergy or just growing pains?
I feel like I am trying to put together an impossible puzzle with a million pieces. Some fit together, some don’t. Some fit one day, but then when I try to piece them together with other areas, it doesn’t work.
It’s constant and it’s exhausting.
I am grateful, so very grateful right down to my toes, that my sons’ have received their various diagnoses. Every one has brought options for help that we didn’t have before. My children are feeling better. They are able to enjoy life in ways that were impossible a few years ago.
All of this is so worth it.
And yet, the number one question I receive when I reveal all these comorbid conditions is this –
Are you sure they really have all these diagnoses?
This is always asked with disbelief mixed with a little bit of disdain. As though I have somehow exaggerated or missed a memo.
My answer is, “I am as sure as I can possibly be about these diagnoses. I am as sure as his doctors are certain.”
Unless they have a serious mental illness of their own, no one does this for fun.
No one does this for attention.
I simply want to be believed. More importantly, I want my children to get the help they need.
This is what happens when your child has comorbid diagnoses.